A visit to any specialist for your child can be scary. Although most children are pretty healthy, sometimes a parent’s worst fears can come true and they will learn that their child has a complex and chronic disease, such as congenital heart disease. Congenital heart disease simply means heart disease that your child was born with. This can include holes in the heart, valve problems, or other even more complex diseases. Although the diagnosis can be made in teenagers, children, babies, or even while mom is still pregnant, it is always scary and often life-changing. Parents will wonder about their child’s chances of survival, quality of life, and ability to play sports and lead a normal life. They may wonder about their own abilities to take care of their child or whether they will have enough money to pay for medicines, treatments, and doctor visits.
Some of the issues that children with congenital heart disease and their families have to deal with include multiple medicines, difficulty with feeding and growing, or feeding through a tube. When children get older, they may not be able to play all the sports they would like, they may have difficulty with learning, and they may have scars or other physical features that make them look different from their friends and classmates. Finally, many children with congenital heart disease might have problems with other organs or parts of their body, too. And, although not all children with congenital heart disease need surgery, many do – sometimes even three or more surgeries before the child is in kindergarten! Surgeries can be especially nerve-wracking, and for Montanans they are especially stressful because they usually involve travel to a large city, such as Denver, Seattle, or Salt Lake City.
Fortunately, parents of these children are not alone. Once the diagnosis is made, your pediatric cardiologist, along with your pediatrician or family doctor, will become your partners in helping you take the best possible care of your precious child. There may be many other members of your child’s care team, like your social worker, physical, occupational and speech therapist, nutritionist, and pharmacist. Often, though, support from other parents and families who are going through the same thing is the most valuable of all. In Montana there is a support organization for families of children with congenital heart disease, Mended Little Hearts of Montana. This group has meetings, events, a Facebook page, and is made up of families that can help you through the difficult times.
Remember, if your child has congenital heart disease, you are not alone! Medical care, surgery, and technology for these children have improved dramatically over the last 30-40 years. And, there are so many people ready and willing to help you on this journey. For more information about heart care for kids, visit Billings Clinic Pediatric Cardiology.